Roadmap Information & Support Resources

Use the information and support resources provided to help with taking the next steps beyond receiving a rare diagnosis or continuing life without a diagnosis.

Rare diagnosis

After the journey to find an answer, receiving a rare diagnosis can be a time of mixed feelings and more questions. Although information and support specific to the diagnosis is often limited, general resources can help with many aspects of daily life as well as moving forward [...]

Rare diagnosis View the roadmap

No diagnosis

Many children and adults remain without a diagnosis despite multiple assessments and investigations. General resources can help with many aspects of daily life as well as moving forward, even without an identified cause for signs/symptoms [...]

No diagnosis View the roadmap